It’s been 3 1/2 weeks since the last chemo session, and it’s been a hard recovery time for me. I’ve been physically exhausted, compounded by not sleeping well or through the night. My spirits have been good, my attitude generally positive, but the lack of physical fitness has been disturbing.

Having to work last week was an unexpected setback.

Mostly, I haven’t even been able to walk as long as 15 minutes. Until a day or two ago, I couldn’t even go 5 minutes without feeling wobbly — like I’d run a marathon. Going up and down stairs too many times would produce the same feeling of exhaustion in my leg muscles, complete with pounding heart.

I am the heaviest weight of my life, all because I can’t move more than briefly without wanting to fall over. It’s been a terrible time, and a terrible feeling.

Now, I’m not one to give in to adversity (a blessing and a curse, of course), so I’ve been trying to get out with J at least for the evening Sasha walk. By slowly pushing it, I could make it as far as 10 minutes.

Today, however, I took Sasha for a 15 min walk all by myself. (It was even raining.) Although I feel tired, I do not feel exhausted. This is a huge step forward. HUGE.

And yes, I realize its a screwed up life when you need to celebrate walking for 15 mins.

Tomorrow (5/5) is my final chemo session. Part of me is incredibly happy it will soon be over. Mostly, however, I’m just very tired and drained. I’m not actually ready for another round — it’s like I didn’t recover from the last time.
Sorry to be a bit down, but it’s not that I’m UNhappy, or sad, or anything. Just tired.

First of all, I seemed to get a bit of an infection that required antibiotics. This was on Wednesday, chemo day. I absolutely had a brain freeze and just didn’t think to tell my oncologist (yes, I know — stupid of me) until Thursday evening. (Thanks to my mother for politely pointing out that I needed to make that call immediately.) So I spoke with the on-call oncologist and he insisted I come in for a consult the next day.

So I did.They explained to me in simple terms that any infection may have serious repercussions. That I was not smart to not have told them, and don’t do it again. Moreover, they really don’t want me getting seriously ill because it may delay the next (LAST!) chemo treatment . . . the worst case scenario is that I would have to start all over again. The result of which is that I was given a choice between having a Neulasta shot or coming in every day over the weekend for a GbGH shot. So, despite my reservations, I had the Neulesta.

Now, each chemo cycle has had a shape, although each has been remarkably different. Day 1 sees me with a slight lowering of energy, but I can walk Sasha in the morning and evening. Day 2 sees a significant lowering of energy, but I have been able to walk Sasha in the morning, although it’s not at all something I want to do in the evening. Day 3 has been the worst — absolutely low energy, hard to concentrate on anything, loud noises (even the TV) are painful. . . it’s a bad day all around. This is the day that makes people worry — the usual Lisa is greatly diminished, my energy at an extreme low.

Day 4 sees a return of some energy, but also the onset of the bone pain from the Taxotere and the immediate start of dilaudid. So its a tad paradoxical: I *feel* better and have more energy but am ‘out of it’ because of the dilaudid. Day 5 and maybe 6 see increasing energy and are only bounded by the dilaudid. (Day 5 is when people say ‘you look more like yourself, you clearly feel better.’)

This time around, the Neulasta made a huge difference, aided by the infection and concomitant antibiotics, I’m sure. I was more tired, earlier, and the pain started on Day 3. Neulasta pain, btw, is described as ‘bone pain’ but it isn’t. It’s pain in the large muscles and the small of the back (perhaps shoulders), as if you were running stairs or lifting weights and overdid it. It’s not the crippling pain of Taxotere, which truly is bone pain (like you feel when you get a very bad fever).

I know, you weren’t expecting all of this talk about pain.

The final effect, which as easily could be what they mean when they say ‘the effects are cumulative’ is that I continue to be pretty tired. I’m having a hard time sleeping, likely because I’m not getting enough exercise (i.e., none), but I’m too low energy to feel like doing anything . . . other than walking Sasha 2x/day. So I still get about 30 mins of walking every day.

So I’m thinking of getting a guest pass at John’s gym and going to their yoga classes. I don’t care if I can’t do 1/2 the poses, or can’t do them well. I also don’t care if I can only participate for a week before my next chemo session. It’s a way to get myself motivated, and it’ll be a little stretch (hah! a pun!) for me, but not too much.

So, I am recovering, albeit slowly. I’m taking care of myself. And I am VERY glad I only have one more session to go.

First off: my fever broke Wed night. I took it easy yesterday, but am back to work today (tho’ likely not for the full day). Things are starting to get a bit critical and I’m needed on site.

Most importantly: on time, and unmistakably, I am losing my hair.

My advice for anyone who may read this because they are in a similar situation: if you think you are losing your hair, you aren’t.

My scalp has hurt for a few days, but that so easily could have been the fever. This morning I got up and into the shower and stepped under the water. Hands running through my hair pulled out bunches. Even though I was (sort of ) expecting this it was a very bad moment. A freak-out kind of moment.

I cut my hair short in expectation (dread) of this. I am so glad I did. Losing your hair is — and I recognize that this is entirely a me thing — losing your hair is MESSY. Seriously, it get s everywhere. Long hair would have been unbearable. Not because of the loss, but because I would have hair in my eyes ALL THE TIME or look down to see a clump just lying on my sleeve. Ugh.

Yes, this happened 30 mins ago. Mourning will occur later. For now, I am glad I listened to my intuition and prepared for this . . . I have so much hair it is going to take a bit for it all to go. I feel ‘safe’ going to work . . . but they’ll be surprised on Monday.

I haven’t talked a lot about the spiritual side of my journey, mostly because it is intensely personal. Moreover, I’m in the middle of the journey and what I am seeing lacks perspective. But please don’t think that my priestess self is dormant, or that I have left my faith by the wayside.

Oh no. Far from it. My faith, the connection I feel to the Divine is utterly ongoing and completely present. This is no ‘dark night of the soul.’ It’s not even a twilight foreshadowing. (C0ntinuing the metaphor) I’m walking in the glorious sun of high noon with the Divine at my side.

Which may be one reason I’m not comfortable with terminology that makes what I am going through a battle, or me a survivor. Does flying to Kyiv make one a warrior? (Ok, if everything goes wrong it can feel that way. But still.) I’m on a journey, one perfectly designed so that I can learn very specific lessons — lessons I’ve been avoiding or just not getting up until now.

If anything, the Divine is taking this little dunce in hand and shoving her up to the next level. 🙂

I went off the dilaudid on Friday morning and had no return of the pain. Yesterday I was still a bit low energy, and with a dinner party in the evening at my boss’ house I was conservative with my energy all day (just in case). The party was fun (I even had a couple of small glasses of wine) and we had a good time. But after 2 hours, I was very ready to go home.

Another good night of sleep and I am feeling phenomenally better. It’s even a gorgeous, sunny day outside (sadly, I must hide from the sun as it interacts poorly with my chemistry at the moment). So I know there is an extra long walk this evening as well as a new DVD to exercise to (I got a bunch from the library to round out my limited repertoire.)

Day three was a real low, and I thought I was turning a corner (positively) yesterday.

In many ways, I was.

But in the evening I developed severe pain in all of my joints — similar to what you feel with a very bad flu. We called in to the oncologist and apparently this is a typical reaction to the taxotere . . . but a few days later than usual. (Who’s special? Lisa is special!) The oncologist recommended heavy-duty painkillers, so I am now on my old friend Dialudid. For a few days.

Loopy am I.

No work for me. The upside is that I was able to go for a walk (15 min) this morning, which just helps keep the fluids moving) and I’m feeling very good. And if I am bored, I don’t really care. 🙂

It’s more than a little frightening that I feel worse as time goes by; and that this is cumulative.

Because I feel utterly wretched. I have a headache (never good) and am fatigued. The worse part is that I have an awful sore throat — like a prickly lump at the back of my throat, scraping my tongue raw.

I have a call in to my oncologist to see if there is something palliative I can take to ease the soreness. In the meantime, I’m just waiting for time to pass.

I conquered the steroids problem: 1/2 dose taken at least 1/2 hour after both anti-nausea and prilosec are taken and with food. yay.

ye gods, though, I am tired. despite a good night’s sleep.

Drinking lots of water, tea, and some juice.

So, this is what being poisoned feels like? It’s tough. Not painful, just . . . boring I guess. I make lots of typos when I write, my head isn’t ‘in the game’ and apparently I’m clearly low energy. (I usually have a big field of energy around me. I do not, now.)

I’m also cold, a lot. I’m sitting here in a warm house with a fleece hat on, my neck wrapped in a luxurious silk scarf, in a fleece jacket over a turtleneck. I’m still a bit chilly.